SO,
SO, WHAT
SO, WHAT DOES THE WORD NORMAL MEAN TO YOU?
A NEW MEMOIR OUT NOW ABOUT THE
SAMMAMISH MOTHER OF A CHILD
WITH A LIFE-CHANGING GENETIC
DISORDER WILL GIVE YOU A WHOLE
NEW PERSPECTIVE ON THE WORD.
MAGDALENA NEWMAN AND HER SON
NATHANIEL JOIN ME NOW.
IT IS GOOD TO SEE YOU BOTH.
>> THANK YOU.
>> THANK YOU.
>> HOW ARE YOU DOING?
>> GOOD.
>> GOOD.
>> GOOD. >> THE REALLY INTERESTING THING
IS THAT THIS GOOD, NORMAL, IS
ACTUALLY TWO BOOKS.
ONE TOLD FROM YOUR POINT OF VIEW
AND ONE FROM NATHANIEL SPINA OF
VIEW.
VIEW.
VIEW. HOW
VIEW. HOW DID THAT IDEA COME ABOUT?
>> WELL, WE THOUGHT ABOUT
WRITING A MEMOIR FOR QUITE A
BIT AND, ACTUALLY, WE WERE SUPER
LUCKY TO KNOW THE AUTHOR OF
WONDER.
WONDER.
WONDER. SHE DID ENCOURAGE US TO WRITE
OUR OWN MEMOIR ABOUT THE LIFE
OF A CHILD WITH THIS SYNDROME.
AND A HUGE POPULARITY OF WONDER
ACTUALLY ENCOURAGED THIS.
>> NATHANIEL, HOW DID IT FEEL
FOR YOU TO WRITE YOUR OWN
VOICE, YOUR OWN EXPERIENCE
SEPARATE FROM YOUR MOMS?
>> IT WAS NICE. IT WAS A GOOD
WAY TO JUST PUT ALL MY THOUGHTS
OUT AND IT IS ALWAYS FUN TO JUST
LOOK BACK AND SEE HOW I THOUGHT
IN THE PAST. IT'S A GOOD WAY TO
SEE HOW I CHANGED.
YOU KNOW?
YOU KNOW?
YOU KNOW? >> AND OVER TIME HOW YOU
PROGRESSED AS WELL AND MATURED.
WHAT ARE THE THINGS YOU GUYS
WANT TO COMMUNICATE HOW TO DEAL
WITH DIFFERENCES IN SOCIETY?
AND WHY THAT IS SO IMPORTANT.
NATHANIEL, TELL US ABOUT WHY
YOU THINK THAT'S IMPORTANT FOR
US TO KNOW AND WHAT YOUR
EXPERIENCE HAS TAUGHT YOU.
>> I THINK IT'S IMPORTANT TO
KNOW THAT EVERYONE IS DIFFERENT
. JUST BECAUSE, FOR PEOPLE WHO
FEEL OUT OF PLACE THEY MIGHT
READ THIS BOOK AND REALIZE THAT
MAYBE NORMAL ISN'T WHAT THEY
SEE IT AS AND THAT THEY CAN GET
A BETTER UNDERSTANDING AND
MAYBE FEEL BETTER ABOUT
THEMSELVES.
THEMSELVES. >> I THINK THAT'S SUCH A GOOD
POINT.
POINT.
POINT. THERE'S SOMETHING DIFFERENT
ABOUT ALL OF US SOMETIMES IT'S
MORE VISIBLE, SOMETIMES IT'S
LESS VISIBLE.
LESS VISIBLE. WE ALL FEEL OUTSIDE SOME OF THE
TIME.
TIME.
TIME. MAYBE IF WE EMBRACE EACH OTHER
THAT COULD BE EASIER.
FOR YOU AS A MOM WHAT IS THIS
EXPERIENCE LIKE TO DEAL WITH
BEFORE PREGNANCY AND AFTER
NATHANIEL WAS BORN, TELL ME A
LITTLE BIT MORE ABOUT THAT.
>> I DID HAVE TO ADJUST TO OUR
NEW NORMAL.
NEW NORMAL. AND MICHAEL RIGHT AFTER
NATHANIEL WAS BORN WAS TO MAKE
SURE
SURE
SURE >>
SURE >> HE IS SO CUTE.
>> SORRY, NATHANIEL, YOU
PROBABLY DON'T WANT ME TO SAY HE
IS ADORABLE.
IS ADORABLE. >> THANK YOU.
HE HAS THIS NORMAL CAREFREE
HAPPY CHILDHOOD.
HAPPY CHILDHOOD. I TRIED AND DESPITE THE
DIFFERENCES NATHANIEL COULDN'T
EAT BY MOUTH, COULDN'T BREATHE
LIKE WE ALL DO, COULDN'T HEAR
LIKE WE ALL DO.
AND HIS LIFE WAS FILLED WITH A
LOT OF SURGERIES AND A LOT OF
TIME IN HOSPITALS.
>> NOT JUST A FEW, BUT 67
SURGERIES YOU HAD BY THE AGE OF
15.
15.
15. >>
15. >> YES.
>> YES.
>> YES. >> THAT'S A LOT TO GO THROUGH.
>> YEAH.
>> YEAH.
>> YEAH. THANKFULLY, A LOT OF THEM WERE,
ALTHOUGH I CAN'T REMEMBER THEM
OTHERS WERE JUST DONE AT THE
SAME TIME AS OTHERS JUST TO MAKE
, I GUESS, TO SAVE ANESTHESIA.
I WOULD GO IN FOR ONE SURGERY
AND THEY WOULD FINISH THAT UP
AND THEN DO THE SECOND ONE
RIGHT AFTER.
RIGHT AFTER. >> DO THE OTHERS RIGHT AFTER
THAT.
THAT.
THAT. >>
THAT. >> SEPARATE SURGERIES IN ONE
ANESTHESIA.
ANESTHESIA. >> YOU HAVE HAD TWO DIFFERENT
BOUTS OF CANCER THAT YOU HAVE
LIVED THROUGH.
LIVED THROUGH. >> YES.
>> YES.
>> YES. >> YOU GUYS HAVE HAD A FULL
PLATE FOR A LONG TIME.
HOW DO YOU DEAL WITH PEOPLES
CURIOSITY AND SOMETIMES
INSENSITIVITY, NATHANIEL?
INSENSITIVITY, NATHANIEL? >> I JUST ANSWER THEIR QUESTIONS
. USUALLY THOSE THINGS ARE
TEACHING EXPERIENCES FOR THEM,
SO, I BEASLEY, A LOT OF THE
TIME THEY DON'T KNOW WHAT THEY
ARE DOING COULD BE HURTFUL.
THOSE EXPERIENCES ARE JUST GOOD
WAYS TO HELP THEM GET A NEW
PERSPECTIVE.
PERSPECTIVE. >> EVERY MOMENT OF WHEN A
PERSON WAS CURIOUS AND THEY ARE
CURIOUS THAT HE CAME OUT AND IN
DIFFERENT WAYS SOMETIMES IT WAS
JUST DARING AND SOMETIMES IT
WAS A RUDE COMMENT, WE TRY TO
TAKE THAT AS A TEACHING MOMENT.
>> THAT TAKES A LOT OF GRACE
AND PATIENCE, ESPECIALLY FOR A
YOUNG PERSON LIKE YOU.
I ADMIRE YOUR ABILITY TO DO
THAT.
THAT.
THAT. WHAT WOULD YOU LIKE US ALL TO
KNOW ABOUT HOW TO HANDLE PEOPLE
WHO SEEM DIFFERENT IN SOME WAY?
WE SEE YOU AND MEET YOU IN
PUBLIC AND HOW DO WE HANDLE
THAT PROPERLY IN A WAY THAT
WOULD ON YOU?
>> JUST UNDERSTAND THAT PEOPLE
LOOK DIFFERENT, BUT EVERYONE
LOOKS DIFFERENT, SO THAT REALLY
SHOULDN'T CHANGE THE WAY YOU
THINK OF SOMEONE.
WHILE THEY MIGHT LOOK DIFFERENT
THEY ARE STILL A PERSON AND
THEY SHOULD BE TREATED AS SUCH.
>> THAT'S PRETTY PROPOUNDING TO
SAY.
SAY.
SAY. AS
SAY. AS A
SAY. AS A MOM THESE THINGS CAN BE
HURTFUL.
HURTFUL.
HURTFUL. >> YES.
>> YES.
>> YES. >> HURTFUL TO NATHANIEL, BUT
HURTFUL TO YOU AS A MOM AS
WELL.
WELL.
WELL. WE
WELL. WE WANT TO LEARN FROM THAT.
THE MEMOIRS HELP US DO THAT.
I LOVE THAT NATHANIEL IS A
VOICE COME THROUGH THROUGH LOUD
AND CLEAR IN THIS AND IS NOT
JUST YOUR MOMS STORY ABOUT
THIS.
THIS.
THIS. HOW
THIS. HOW PROUD WERE YOU OF HIM WHEN
HE FINISHED HIS BOOK AND YOU
COULD SEE HIS STORY TOLD IN HIS
WORDS?
WORDS?
WORDS? >>
WORDS? >> SO PROUD. YES.
I WAS INCREDIBLY PROUD.
NATHANIEL HAS HIS OWN VOICE AND
MY GOAL WAS TO MAKE SURE THAT
IT DOESN'T DEFINE WHO NATHANIEL
IS AS A PERSON.
HE LOVES HIMSELF.
>> AS HE SHOULD.
YOU SHOULD, NATHANIEL.
WE WON'T TALK ABOUT YOU LIKE
YOU'RE NOT RIGHT HERE.
WAS A DIFFICULT TO DECIDE WHAT
YOU WANTED TO PUT IN THE BOOK
OR DID YOU FIND THAT WHEN SHE
STARTED THINKING ABOUT THIS IT
REALLY JUST POURED OUT?
>> WE JUST POURED EVERYTHING
OUT AND THEN TOOK WHATEVER
WOULD BE FITTING FOR THE BOOK
AND NOT EMBARRASSING FOR ME IN
THE FUTURE.
THE FUTURE. >> YEAH.
>> YEAH.
>> YEAH. THAT'S IMPORTANT ALSO.
MAGDALENA, WHAT YOU THINK YOU
COULD SAY TO PARENTS WHO MAYBE
NOW ARE FACING AN UNEXPECTED
REALITY AFTER BABY IS BORN OR
MAYBE BEFORE BABY IS BORN? HOW
CAN WE BETTER THINK ABOUT THE
WAY IN WHICH THIS VARIETY OF
HUMANITY IS TO BE WELCOMED?
>> WELL, TRY TO LIVE IN THE
MOMENT.
MOMENT.
MOMENT. TRY TO APPRECIATE EVERYTHING
THAT YOU HAVE.
TRY TO BE BEST PARENT FOR YOUR
CHILD THAT YOU CAN POSSIBLY BE.
AND HAVE YOUR CHILD ADJUST TO
THIS WORLD.
THIS WORLD. THAT SOMETIMES IS CRUEL.
HOPEFULLY, IT'S KIND TO ALL OF
US.
US.
US. >>
US. >> WE
US. >> WE NEED TO WORK ON THAT.
>> YEAH.
>> YEAH.
>> YEAH. >> NATHANIEL, TELL ME A LITTLE
BIT ABOUT HOW YOU'RE DOING NOW
AND HOW YOU'RE DOING WITH YOUR
HEALTH, IN SCHOOL, AND HOW
THINGS ARE GOING.
>> I'M DOING GREAT. I'M PRETTY
HEALTHY.
HEALTHY.
HEALTHY. I GOT THE FLU A BIT BACK --
>> I'M SORRY.
THAT'S A BUMMER.
>> I'M PRETTY HEALTHY AND
SCHOOL IS GOING GOOD.
>> YOU GOT THE MORNING OFF, BUT
NOW YOU HAVE TO GO BACK TO
SCHOOL?
SCHOOL?
SCHOOL? >> YEAH.
>> YEAH.
>> YEAH. THE SHOW IS ONLY 30 MINUTES, SO
>> I'M SORRY I COULDN'T GET YOU
OUT FOR THE WHOLE DAY.
THANK YOU BOTH VERY MUCH.
MAC TO HOLD AN AUTHOR TALK